11. How Patients See Home Health Aides – The Aide (or Patient) as Bully

Continuing the theme of Concerns and Issues with home health aides, I would like to talk in this post about bullying.

A very frequent complaint that I hear from people who are disabled, both temporarily and chronically, is that they sometimes feel bullied by the people around them.  This can be family members, friends, doctors, even strangers and very often the people they see the most frequently, their home health aides.

What is perceived as bullying is often well-meant but badly implemented assistance.   This is particularly true when the aide infantilizes the disabled person because they believe the patient cannot make good decisions for themselves.  The aide may push certain foods on the patient, pick out their clothes, try to get them up, bathed and dressed and put to bed when the aide wants, not when the patient wants.  When the patient has trouble communicating or tends to be passive, this is more likely to happen. Certain aides may have more assertive personalities and look at themselves as the boss.  Bullying can also happen because the aide and the patient have different ideas about how and when things should be done.

It should be noted that bullying can also work in reverse.  Some aides are timid and passive and are more likely to be bullied by the patient or family.  In this case, the aide can either speak up (“this is not on my task list” or “I’m not permitted to do that” or “there isn’t time left on my shift to complete that, today”) or ask for the agency for help.

What can be done by the patient who feels bullied?  Preferably, the time to deal with bullying is when it first happens.  If there were such a thing as “patient training” one would want the patient to learn to say:  “Thank you, but I’m not ready to get dressed,” or “I’m used to picking out my own clothes,” or even “I didn’t understand you.  Please say that again slowly.”  If the patient isn’t able to do this comfortably, family members or friends can be enlisted to help, but ideally it should be the patient, calmly and repeatedly, insisting on their right to live as they wish to.

If the aide is truly bullying, this may require intervention by the health care agency.  It may be a cultural issue or a personality issue that demands a greater authority to control.  The patient, family or agency needs to make it clear to the aide that the patient has the right to make certain decisions for themselves, as long as it doesn’t violate the patient’s safety (or the aide’s) or require the aide to violate the law.  Making decisions for the patient based on the aide’s convenience is not acceptable or appropriate and this has to be spelled out.

Ideally, it should be enough to inform the aide in a polite but firm manner that certain decisions must rest with the patient.  There may, of course, be some aide-patient dyads with personality conflicts that are irreconcilable.  In this case, it would be best for both parties for another aide to be sent.

10. How Patients See Home Health Aides – The Aide as Persecutor (3)

In this blog I want to discuss aides who are actually deliberately malicious in their behavior. These are serious situations and require drastic actions.  In some cases the aide is performing criminal actions and may even pose a physical or financial menace to the patient.  There is only one solution here, and that is to remove the aide as quickly as possible.

Firing an aide under these circumstances can be problematic for several reasons. Establishing the problem can take time and a truly malicious aide can also charm or frighten the patient/family into waiting or doing nothing.  If the patient is somewhat confused, it may take a while for others to realize that there actually is a problem.  Some patients may even doubt their own memories and let slide lies and mistakes.  In this important relationship, the patient and other involved individuals, have to monitor the situation closely early on.

In the examples given below, some deserve one chance for correction, other need to be addressed immediately.

  • Aide as liar:

I have seen and have had reported to me incidents in which the aide has lied to the patient. Sometimes it’s out of a defensive fear or concern with being fired; at other times it was to cover up damage or theft of property.

“No, I didn’t burn anything.” – meanwhile, a smell of burning pervades the kitchen.

“I was only out for an hour doing your laundry” (after an absence of 3 hours).

“I didn’t move that.”

“That pot already had a crack.”

  • Aide as “gaslighter”

Sometimes the aide compounds the lie by implying the patient is demented or crazy.

“How could you not remember that? You must be losing it!”

This is a difficult situation to fix. The patient, if courageous, might confront the aide about the first lie but if the aide is defensive and refuses to admit to wrong doing the relationship is damaged beyond repair and the aide must be replaced as soon as possible.

  • Aide as thief:

There are aides who steal. There are also patients who misplace things and believe they’ve been stolen.  There are patients who give things away and forget they’ve done so.

This is a difficult situation to deal with. Patients with memory problems may hide or move things and forget where they put them.  One doesn’t want to needlessly damage the reputation of a person who might be the sole support of a family.

Again, the time to deal with this is before it happens.  If there are expensive items (jewelry, precious ornaments, expensive clothes, delicate objects) pack them away in a locked closet or lock box before the aide arrives or give them to a trusted friend or family member.  This safeguards everyone.  While it is a shame to have to live without some of your possessions around, it is better than losing them permanently.

  • Aide as Menace:

I have heard about and even seen aides who have threatened their patients.

“You know, I am a practitioner of Santoria,” said to patient with paranoid psychosis.

I have had patients so terrified that they were paralyzed and unable to act to end the persecution. When the aide is a private one and may have been given a key, this is even trickier.  The locks will have to be changed, doormen or building staff alerted, if there are any, and Adult Protective Services or the police called.

If I feel a crime is being committed I encourage the patient, or family, to call the police or APS. If there is suspicion but no certainty, I encourage them to call the agency or their nurse to have the aide replaced (and have even on occasion done so myself at the request of the patient or family).

9. How Patients See Home Health Aides – The Aide as Persecutor (2)

In this blog we will continue talking about ways in which aides can impair the lives of their charges.

  • Aide as Reorganizer

There are aides who rearrange things in the patient’s house in ways that make more sense to the aide but leave the patient searching for things, especially if that aide is not around. This can be especially true regarding cooking utensils and foodstuffs, bathroom articles, soaps and laundry detergent, and clothes and other personal items.  I’ve had several sight-impaired patients whose aides rearranged their belongings either from a misplaced sense of helpfulness or from sheer stupidity. This can be devastating as you try to navigate your environment and maintain some sense of independence.  Some patients with dementia, may think the aide stole things when they cannot find them.

This is something that can be prevented as the aide begins work. While the aide always receives a list of required duties, the patient, or patient’s family, can also include a short list rules (this will be the subject of another blog).  One of these is an instruction NOT to rearrange or move things around.  It is also useful to go over this with the new aide, verbally and remind them if things are out of place.  Remember, also, the aide may forget where something goes.  If so, it is to be hoped that she will ask.  The patient or family member who finds things being reorganized and doesn’t like it should say so firmly as soon as they discover it is going on.

An aide who decides to redecorate might consider the following:

  1. Ask the patient or family member FIRST!
  2. If the patient agrees, tell the patient where you are placing things and remind them several times.
  3. Label drawers or closets. A post-it note can be very helpful. This will also help other aides (patients may have two or three).

Another very common problem concerns aides (and patients) with differing languages and/or accents. This problem is magnified when the patient is hearing-impaired or suffers from memory loss.

  • Aide as alien:

This is a difficult issue. In large cities, particularly NYC, many aides speak English as a second language or have thick accents that take some getting used to.  Additionally, many patients also have limited English skills or themselves speak with a thick accent.  This can cause serious communication problems between the patient-aide dyad.  Other problems include aides with very low voices working with hearing-impaired patients.  This is not something dealt with in “aide-school” but it ought to be.  Aides can be encouraged to speak slowly, enunciate better and not take personally having to repeat themselves.  It is of great importance that they be at least aware that there is a problem and that it is not exclusively the patient’s fault.  The patient or family can help be aware of the problem and find a mutual solution.  The time to deal with this is when the aide arrives and the language problem becomes evident.

I would like to relate a situation like this that I was able to repair. The patient, Ms. X, an MS survivor, told me in her very weak voice that she didn’t understand her new aide’s name.  She said she had asked, twice, but couldn’t make out the answer.  She was depressed and uncomfortable about having an aide she couldn’t identify or call (She didn’t want to yell “Hey, you!”)  With the patient’s permission, I went to the aide, introduced myself and asked her name.  She mumbled something several times which I couldn’t understand and then finally showed me her ID.  In tiny letters, there was a name I had never heard before, “Edverlith.”  I said to the patient, “You know, your aide has a name I never heard before and which I find difficult to pronounce.  To the aide, I asked:  “Is there some name or nickname that Ms. X could use that would be easier for her to remember and say?  The aide suggested Edy.  The patient’s mood improved during the rest of the session. This was confirmed, the following week when Ms. X told me she felt that my intervention had given her some control of her environment as she could call the aide by name.

This solution may seem simple, but the patient could not articulate her discomfort and couldn’t think of what to do. If there has not been initial education of the aide, the next good time is when the problem in communication occurs. It can be helpful to have an outsider intervene.

In the next blog I will discuss deliberately malign actions by aides.

8. How Patients See Home Health Aides – The Aide as Persecutor 1

For some chronically-ill patients, the presence of and need for an aide is so humiliating and enraging, that the aide, regardless of their personal or professional qualities, takes on the persona of persecutor. They come to embody or symbolize the illness or disability to the patient.  While the perception of the aide as persecutor may come largely or even entirely from the patient there are times when the aide is indeed a serious problem.

In this, and in the next few blogs, we shall look at “The aide as persecutor” in a number of iterations. In each case we will look at the aide’s effect upon the patient and what might be done about it.

  • The Aide as Idiot

In my many years as therapist to chronically ill and disabled patients, I have heard and heard reported a number of supremely idiotic remarks made by aides with little imagination and no impulse control. Some examples:

Said to a nearly paralyzed patient: “You are so lucky.  You get to spend all day in bed!”

Said to a Jewish patient: “you know, you Jews…….”

Said to a nursing home patient: “In our culture, we NEVER put our relatives in a nursing home. The family always takes care of their own.”

What do you do with someone capable of uttering these inanities? That depends on a number of factors.  If the aide is technically skilled, gentle, efficient, honest and in other ways satisfactory, it might be worth it to try and gently explain that these are offensive remarks.  If necessary, a relative or friend might do so.  Also, how often does the aide make such remarks?  Daily?  Weekly?  Once?  If most of the aide’s other qualities are good or acceptable, it may be worth it to tolerate an occasional stupid remark. If it happens too frequently, then, of course, the aide has to go.

There are some aides who make inappropriate remarks related to religion, diet, or another type of lifestyle choice.

  • Aide as fanatic

A number of my patients have reported aides asking about religious beliefs.

  • Said to a Moslem patient: “Have you found Jesus as your personal savior, yet?”
  • Said to a Jewish patient: “I’m going to pray over you for Jesus to heal you.”
  • An aide accompanying a patient in the community engages others in religious talk and leaves religious materials at doctor’s offices and other places they go while she is working.
  • Said to a woman with multiple sclerosis: “If you give up nightshade vegetables you might be cured.”
  • Said to a male patient with a complicated medication regimen: “You take too many pills. All you need is a multi-vitamin.”
  • “You’d feel better if you’d just eliminate gluten!”
  • “You’d be able to walk if you’d just get up and try.”
  • “I know a Chinese herbalist who could cure you in a moment.”

In such cases, the aide must be told, and in no uncertain terms, that these remarks or actions are uncalled for and unwanted and must stop immediately. If they don’t, the aide must be reported and replaced as soon as possible.  Unfortunately, I have found it is very difficult to stop this sort of behavior for long.  A serious consequence is the only solution.

In the next blog we will talk about other ways aides can annoy, disturb or torment their patients.

7. How Patients see Home Health Aides – The Aide as Friend

In this series, we are looking at the roles care receivers project onto their aides or caretakers. In this blog, we will look at the Aide as Friend.

Most of us have a specific label or pigeon-hole for somebody who hangs around your house and helps out from time to time. This label is “friend,” and is often misused or misunderstood, as when we talk about “work” friends or “activity” friends.  These are people with whom we may share certain pursuits, but whose real interest in us is more transitory or distant.  Likewise, when someone is in your house, behaving in an affable way, we may mistake their conduct for friendship.  What is the difference?

  1. Real friends choose and enjoy our company and we, theirs.
  2. Real friends share confidences and trust.
  3. Real friends care, after hours.
  4. Real friends expect and accept reciprocity.
  5. Real friends genuinely care about or even love us, and vice versa.

None of these goes with the job description of Home health aide. They are not expected to enjoy our company or to entertain us, share confidences, or be available after hours.  Their job is to provide services for which they are paid.  Over time, they may come to like, though rarely love, us.

Many caregivers feel insulted or hurt when their expectations of friendship are rebuffed. Caregivers may be uncomfortable when they are not sharing their food or facilities, or are enjoying television, DVDs or music of their own taste.  Relax.  The aide is NOT a friend and shouldn’t expect the benefits of friendship.  Obviously, we want them to feel comfortable in our dwellings, but not “at home.”  Think about how your (good) friends behave when with you and you will see the difference.

The opposite can also occur, although less frequently, when the Aide steps over the boundaries to confide or inquire about intimate things, attempt to borrow money, ask to be excused from obligations and responsibilities or help themselves to food or other objects. One needs to put a stop to it at once firmly, though politely.  Once the boundaries are breached, it is very hard to return to the normal aide/care receiver relationship.  Many a good working relationship has been ruined when pseudo-friendship intruded.  Keep it simple.  Keep it cool.  Keep it professional.


6. How Patients see Home Health Aides – The Aide as Slave/Servent

In this series of blogs, we are discussing ways that care receivers look at their aides or caretakers. In this section we will look at the Aide as servant or even slave.

“Anita! Pick up these clothes I left on the floor. I need them ironed!”

“Anita! I’ve told you many, many times, I like the toothpaste to cover ALL the toothbrush bristles. Can’t you ever get it right?”

“Anita! How could you buy this brand of spaghetti?  Don’t you know the store brand is just as good?”  [shortly after] “Anita!  You got the store brand of raisins.  Don’t you know, the quality is never as good with the store brands?!”

Who is this person? I have seen a number of patients who believe that they are hiring a servant, or worse, a slave, when an aide arrives to take care of them.  They are wrong twice.  First of all, they aren’t usually paying, Medicaid is.  Second, an aide has very specific tasks, based on the patient’s particular deficits and needs.  This list of tasks is almost always outlined on a document sent by the agency providing the service.  This list never includes:

  1. Taking abuse (being spoken too rudely or roughly
  2. Taking care of the patient’s spouse, children, pets or friends
  3. Providing cordon bleu cuisine
  4. Heavy cleaning (like ironing, window washing) or
  5. Mind Reading

But let’s for arguments sake, allow that an aide is a type of servant. Dealing with servants is a skill that takes training and experience.  Even rich people who grow up with servants don’t always do this well.  And many people, who themselves worked in the service industry, even as home health aides, forget all they learned and experienced when they are now receiving care.  There is an ancient expression which explains the proper attitude to take with servants:   “Noblesse Oblige.” As many of you know, it means nobility obliges you to act nobly,” that is, to treat the less fortunate (those who depend upon you) with respect.  When you are in charge of someone whose livelihood depends upon your good will, you are obliged to treat them civilly.  That doesn’t mean you let yourself be taken advantage of or otherwise mistreated.  It means that you call your aide by whatever name they invite you to use, you say please and thank you, you apologize for providing any extra work, and you don’t demand they do anything that they are not supposed to do.  By the same token, the aide should call YOU by whatever name you choose, provide the services they are supposed to, bring their own food, stay off the phone for most of the time, (apologize if there is a communication difficulty), and treat you politely and civilly.

Many “care receivers” believe that if you cut some slack with the aide, they will get something back. Please look at a coming blog called Negotiating with your aide, to see more on this topic.

5. How Patients see Home Health Aides – The Aide as Mother

As I noted in the first blog in this group, caretakers can play different roles in the lives of those they tend. Because of the nature of personal care, one of the most intense roles is that of the mother, washing, feeding, dressing and other intimate roles as needed.

Our earliest template for receiving care is motherhood. Our mother prepared food and fed us; bathed and dressed us; toileted us and soothed us when we were agitated or depressed.  When once again we require someone to perform these acts, there is an inevitable regression toward the helpless passivity of infancy, as well as the inchoate rage resulting from unmet needs.  An adult, lying in a cold, wet, soiled diaper in a nursing home re-experiences all the rage or despair of a neglected infant.

And, woe to the aide causing this neglect! I have seen so many patients explode in what seemed to others to be an overreaction to a trivial event.  To the patient, though, the humiliation and distress of lying soiled, having a run of mucous sitting on one’s face, not being properly shaved or coiffed, being seen exposed or naked, wearing mismatched clothes, having to eat foods one doesn’t like, getting up too early or going to bed too late and on and on and on is not trivial.

When needs are chronically unmet, some patients go into a depression characterized by withdrawal, increased passivity and dependency. They stop trying. I’ve been told that nursing home administrators love this because these patients don’t cause trouble and their increased needs result in additional reimbursement.  That’s for another topic!  Other patients become chronically enraged, alienating all those around them for the sins of a few.

Aides and other caretakers need to be made aware of the potency of their caretaking acts. Their work must be done without taking away dignity and control.  When I’ve done training for aides, I came up with five rules for not being a bad parent (aide).  These may seem obvious but you’d be surprised at how many of them are violated regularly.  These are:

  1. Inform the patient what you are going to do beforehand, don’t just start working on them or moving them around.
  2. Give the patient some control over the process (Which shirt do you want to wear?)
  3. Ask the patient to help within his/her capabilities (“Here’s the soap. Could you wash your stomach?”) This is a particularly good idea for washing the patients genitals as some patients are mortified by others touching them and some are overly stimulated by it.
  4. Perform the care gently and slowly and announcing what you are about to do (“Are you ready for your next spoonful?).
  5. Perform the care in a timely manner.

If you are the “care receiver,” or their therapist, it is useful to explore any strong feelings being generated by the care-giving or care-giver. This is not to blame the victim.  There are plenty of lousy aides and inept caregivers.  In fact, I would venture to say that all caregivers are inept occasionally, or always inept in some ways.  But life happens.  Every meal is not going to be perfect.  Sometimes you have to wait for things.  If there is a negative or critical response to all care, then sometimes the “care receiver” needs to look inward.  What are you expecting?  Who is the caretaker playing in your early life?   In the next blog we look at the Aide as Servant.

4. How Patients see Home Health Aides

I have worked for nearly 20 years with patients who have been or become disabled, either by injury, disease or through the processes of aging. While some have been disabled temporarily, that is, recovering from an accident or an operation, most have faced a future of continued dependence and care.  The distinction between temporary and chronic disability can make all the difference in how one perceives and responds to one’s condition, and to one’s caretaker.  What I have to say pertains less to temporarily incapacitated patients, than to the chronic patient.

When I started thinking about this topic, several years ago, I began to recall the good and bad I had witnessed or heard about from my chronically ill patients. I recalled stories of aides whose lack of training, sensitivity, intelligence, or worse, active malevolence, made the lives of my patients more difficult.  In some cases, I was able to help in either improving the aides’ performance or in getting rid of them.  I also remember stories of aides whose warmth, support and encouragement made it possible for patients to redefine their lives and make them supportable.  And sometimes, the very defects between the patient and caretaker made for a vibrant and stimulating encounter which benefitted both.

Patients often tend to see home health aides in black and white terms, or as playing certain roles in their lives. I made a list of the various roles that caretakers can play in the lives of their charges.  Sometimes they play more than one, and sometimes they move between roles during each day or over time.  The best aides, make use of their role, consciously or not, and may be able to turn a patient’s embittered life around.  Here are some of the major roles that I have identified:

  1. AIDE as Mother
  2. AIDE as Friend
  3. AIDE as Servant/Slave
  4. AIDE as Persecutor

In each of the next 4 blogs, I want to talk in more detail about these four roles, giving examples of AIDES who served these roles in my patients’ minds and what transpired.   There are several other, lesser roles that I have noticed and will discuss in the last blogs on this subject.

Senior Scams – Walking Around Scams

In this blog I want to write about an experience that was related to me by an elderly woman, Mrs. N. Several years ago Mrs. N. was stopped on the street by an older man with a foreign accent and a younger man who appeared American.  The younger man asked her if she was aware of a local church, the Holy Child Church of Queens.  Mrs. N., a religious woman, wasn’t aware of the church.  It was explained to her that the older man was from Ghana and had a large financial gift he was bringing to donate to this church.  He indicated a “bag of money” that he was carrying.  The younger man said that he had just met the older one and was helping him.  Mrs. N. actually got into a taxi with these men and they went to the address of the Holy Child Church of Queens.  Of course, there was no church there.  The older man began to fret and said that he had a plane to catch but was determined to give his donation to a local church and asked Mrs. N. if she belonged to one.  She said yes and agreed to receive the money which she would bring to her church the next day.  The “bag of money” was opened and she saw stacks of $20.00 bills.  It was explained to her that to show “good faith” she must take money out of her checking account and give it to the elderly man.  They took her to her bank and she withdrew everything she had in her checking account, about $2500.  This money was exchanged for the “bag of money.”  She took the “bag of money” home and found that the top stacks of bills were cut up newspaper with one $20.00 bill on the top of each.  The two men had vanished with her$2500.00 which she had voluntarily given her.

Today, with copying costs so low and copying machines so good, the stacks of money could have easily been made of counterfeit bills, much more convincing. Mrs. N. was angry and humiliated and could barely relate this story.  She wondered if she should be allowed out by herself, anymore.  She had given away almost all her savings and didn’t understand what possessed her to do so.

This is clearly an extreme story, but it happens regularly enough that scammers are continuing to do it. Elderly victims may be too embarrassed to report it or feel that it would be useless to do so as the scammers and the money are gone.  My concern was also that these scammers had stolen Mrs. N.’s self -confidence, as well.

What is the moral of such a story? Again, there is no free money.  No one is running around giving away wads of cash.  IT DOESN’T HAPPEN so if it appears to be happening, it’s most likely a scam and don’t fall for it.  The “good faith” request for money is a clear give-away, but any promise of money for nothing is also one.  If someone promises you something, walk away quickly.

3. The Home Care Aide as Coach

When able-bodied people become disabled, either temporarily or permanently, a home care aide is often called in to assist with their care. After becoming disabled, either from an accident or an operation or other medical procedure, people often don’t feel like doing what they need to in order to recover.  They may feel too tired.  The shock or trauma of the event can make them feel hopeless and broken.   This is particularly true following heart attacks and strokes.  The patient may find it hard to believe that he or she will ever be whole and independent, again.  They may be in pain, irritable and depressed.  This can also be true of chronically disabled patients who must do daily stretches and other exercises to keep themselves from becoming even more handicapped.

The home care aide is in a unique position to help the patient recover and rediscover their independence. In other words, the aide can function as a coach, encouraging their patients to initiate and complete their exercise regimen.  The physical, occupational and speech therapists may be present a few times a day or week, but the aide is always there.  Their relationship with the patient is closer and more intimate.  They know the patient’s strengths and hopes as well as their limitations and moods.

They can encourage, or even push, the patient to wash him or herself in the shower, to stretch down and put on socks and shoes, to take that extra step, to bring a spoonful of food to the mouth.   Sometimes patients become angry when they are asked to do these things, but the aide is not a servant.  Their job is not to wait upon the patient, but to make the patient as independent as possible.  If the patient is capable of very little, even that little can help the patient regain dignity and feelings of efficacy.

The aide is a valuable adjunct in the treatment and recovery process. He or she provides the continuity of care, communicating with physicians, PT, OT, speech, and nursing, keeping things going over weekends and holidays when other professionals are away.  Properly trained, home care aides supplement the full program of rehabilitation or maintenance care.

11. How Patients See Home Health Aides – The Aide (or Patient) as Bully

Continuing the theme of Concerns and Issues with home health aides, I would like to talk in this post about bullying. A very …

10. How Patients See Home Health Aides – The Aide as Persecutor (3)

In this blog I want to discuss aides who are actually deliberately malicious in their behavior. These are serious situations …

9. How Patients See Home Health Aides – The Aide as Persecutor (2)

In this blog we will continue talking about ways in which aides can impair the lives of their charges. Aide as Reorganizer …